“Tortoise and the Hare” Chapter 27

On your mark, get set, GO!

My mind races out of the starting block like the Hare, thinking and running, but my body lays still - moving (or rather, not moving) like the Tortoise.  “Laura I have to pee,” the Hare thinks quickly. “Laura I have to p….., never mind, I am sorry for the mess.” I write out slowly, again NOT moving like the Tortoise.

The most frustrating part of ALS for me is not being able to speak verbally. I am a New Yorker and that’s just what we do. We talk shit and tell stories.

The average conversation rate for English speakers in the United States is about 150 words per minute (wpm). For a New Yorker, though, it’s more like 200 wpm. We simply don’t shut up. Consider us Super Hares. Laura used to tell me I would talk just to hear myself speak. Now she misses my voice.

The average typing speed is around 40 wpm and even though I failed typing class in school, I had gotten pretty good at it before losing use of my hands.

The average text speed for me is about 10 wpm using my non dominant thumb, which is all I have left to use with my tablet. This is far slower then my thoughts (“the Hare”) compared to my physical abilities (“the Tortoise”).

To help with this, Laura and I have developed hand and arm signals. Need to pee? Tap the engine. Poop? Tap the caboose. Suction? Point to my neck or mouth. Lift my head? Make a thumbs up hand and shake back and forth, and to stop, I make a fist. We developed these after the first hospital stay when we were getting frustrated and communication had become especially hard.

This works well for us for quick help and communication, but more detailed needs require time, my phone or tablet, and Text to Talk. If I am not able to use my phone we play charades and we really suck at. Try playing with only one hand and the use of your eyes. That shit is hard.

Before ALS, Laura would call me an “Onion Reporter”. Onion reporters take facts and bull shit and mix it up into one story about a particular topic. One time, when Laura, Chantelle, Dominique, and I were walking in Italy, my inner onion kicked in. I was telling one of my stories, pointing at the sites around us, and making statements to make the girls laugh. Behind us, we heard others laughing. Laura turn to the group and explained I was onion-ing and they should not believe anything I was saying. One of them said they knew, but were we’re having a great time listening to my stories that they planned to stick around for a bit.  My inner Hare was on display and looking good.

When my verbal communication started to effect my work, I adapted by supplementing with devices and email. One day, though, my boss called me into the office to discuss an issue. This was fine at first, but I wasn't able to respond to his questions as quickly as my brain had answers or my hands could type them. The Hare was still running, but the Tortoise was quickly falling behind. I felt humiliated and stopped answering all together. It was at that moment that I knew I it was time to retire and the next day I dropped the paperwork to start the process.

For the first time in my life, I had to come to terms that I was no longer an effective communicator. Until now, I had prided myself with my communication skills. I had been named Instructor of the Year twice, received several awards as a Toastmaster, conducted briefings at the highest levels of the Army, and my verbal judo skills had deescalated too many bad guys to count while working as a Police officer.  This Hare had been the fastest around.

These days, when I am in a conversation with several people, if I cannot answer yes or no quickly, I fall behind. By the time I write out my thoughts, the conversation is two topics ahead or everyone has to stop talking and wait for the Tortoise to catch up. I find myself typing out something only to delete what I wrote because it’s already been said or not relevant to the topic anymore. I even have to raise my hand like a kid in school to speak. This is very frustrating. I often find myself shutting down and just stop adding to the conversation when the Hare is bouncing around in my head screaming to contribute.

It’s becoming easier to just leave myself out of the conversation than even try to engage. When communicating via Text to Speech, the context, inflection and tone gets lost anyway. Try to tell a joke? No one laughs. I try to be serious and people stare at me... confused. I often just answer with a few words or a thumbs up now.

Have you ever had an argument via text? It’s frustrating for everyone involved because you lose all meaning behind the words. Now try explaining yourself when you are upset to someone in the room. Even worse, when someone else is upset and you have no way to communicate. Two steps forward and five steps back all the time. You NEVER win. Frustration goes from 1 to 100 so fast shutting down is really the only option. The Hare is definitely running backwards now mocking how slow the Tortoise is.

There is a beauty in silence that gets lost when we decide to break it. It only takes 600 milliseconds for the human brain to think of a word, apply the rules of grammar, and send it to the mouth to be spoken aloud. No wonder many people say things they do not mean or have not thought through. The Hare gets people in trouble everyday.  Taking time to listen with intention and respond with a well rounded thought is where Tortoise starts to win the race. When communicating with a PALS, we need you to consciously be more like the Tortoise and less like the Hare.

This is my world now. I can no longer just open my mouth and deal with what comes out. By writing my words out I have to think first and share them with the world after. I have to be very intentional when writing my words because that is the only modality I have available to me. I am living with my new form of communication and must remember to keep calm and moving forward while fully relinquishing control to the Tortoise.

I must embrace the weakness in my communication and make it my strength. The strength of the Tortoise comes from knowing he is slow, but never giving up. I am now always aware of the Hare who is learning to stop, be thoughtful, and correct his mistakes and channel the Tortoise who embraces his weaknesses.

In the end, barring a miracle, I have come to terms with the fact that the Hare will never get out again. The Tortoise in me is here to stay. He will continue to move forward one word at a time and he will win the race. As I lose my ability to type with my hands, I will once again have to face a new level of weakness. I will transition to using my Tobi Dynovox Eyegaze technology and my wpm will be even slower. But, my inner Tortoise is steady and will not stop. I will keep learning and overcoming. The more coffee in my feeding tube that Laura gives me, the faster my eyes will get and I will keep turning my weakness into a new strength.

I refuse to let the Hare win.

How are you embracing your inner Tortoise? Do you let the Hare keep you from finishing instead?

I would love to know your thoughts. Pease leave a comment and, as always, sharing these posts.

Love and blessings.